It is a pleasure to serve under your chairpersonship, Mr Dowd. I will refer to paediatric acute-onset neuro- psychiatric syndrome—PANS—and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections—PANDAS—as PANS/PANDAS throughout. Before I begin my speech, I welcome members of the all-party parliamentary group on PANS and PANDAS who are here and those Members who supported the Backbench Business debate application that brought us here. Most importantly, I welcome representatives from PANS PANDAS UK and medical specialists who are here to watch the debate; they will be available to meet MPs in room W3 afterwards.
I acknowledge that there may well be a significant variation in knowledge of the conditions PANS/PANDAS in the room. On the one hand, we are joined by experts and many MPs, including me, who know a little or something about the condition through our casework and campaigning, but I would not be surprised, Mr Dowd, if you did not know what we are here to discuss. The reason that that would not surprise me is because it is also the reason that we are here today: despite becoming increasingly widespread among children and young people, there is little awareness of or treatment for PANS/PANDAS. I hope that colleagues will bear with me if I briefly set out what PANS/PANDAS are.
I congratulate the hon. Lady on securing this debate. She mentioned that awareness is crucial. A family in my constituency of Merthyr Tydfil and Rhymney has been living through what has been described as a living hell—it is a really heartbreaking story—since their daughter first had symptoms back in January. Awareness is low across the country, including in the medical profession in, and the APPG will undoubtedly help with that. I am sure that we are all rallying to raise awareness and support and get awareness out there across the country.
A “living hell” is certainly how it has been described to me in conversations that I have had, not only because of the symptoms themselves and dealing with them, but because of the lack of support compounding that distress.
I will outline what PANS/PANDAS are. PANS is a condition in children and young people that can result from an initial mild infection such as chickenpox or covid. PANDAS is a specific sort of PANS that stems from strep. While the initial infection might be mild, in some cases it triggers a misdirected immune response and/or a brain inflammation that causes the rapid onset of severe symptoms, which can include obsessive compulsive disorder, tics, severely restricted food intake, anxiety, aggression, depression, memory deficiency, poor cognitive function and behavioural and developmental regression. These changes can and do take place literally overnight. Understandably, the impact of those symptoms on a child and their family is monumental. We do not need to be parents ourselves, although many of us here may be, to understand how utterly distressing it must be to have a formerly healthy, happy child suddenly find themselves unable to leave their bedroom, dress, eat, wash, talk to others or attend school and to see them vanish as the illness takes over. Sadly, that distress is compounded and worsened many times over by the lack of available support for patients and their families, as PANS is often not even suggested, considered or acknowledged.
Globally, PANS/PANDAS are recognised and treatment pathways have been set up. The World Health Organisation has explicitly acknowledged the conditions in its latest guidance. However, as things stand, there is neither NHS nor National Institute for Health and Care Excellence guidance on the diagnosis or treatment of PANS/PANDAS in any part of the UK. That leaves patients subject to an unfair and arbitrary lottery. All the evidence suggests that the best treatment is early diagnosis and a two-week course of antibiotics. If that window is missed, antibiotics may become less effective and other treatments are needed.
I am grateful to the hon. Member for securing the debate. I wonder whether they agree that clinical evidence and lived experience across the whole of the UK must inform the evidence base that clinicians and NICE make, and that that must be based on the reality experienced by our constituents who are suffering from PANS/PANDAS. Through this debate, I hope the hon. Member will be able to force that through not just to Ministers, but to the civil servants who are advising them and the clinicians who say that this condition does not exist.
I am conscious that we need to deal with the medical profession in relation to this condition, but we must be able to do things as parliamentarians, and the Government must be able to do things too. Obviously, I am standing here as a Scottish MP, as is the hon. Member. It is about ensuring that there is parity of treatment across the UK.
As I say, I hope it will not be a difficult ask for the Minister to say that PANS/PANDAS is real, because I am privileged to have sight of a letter that she sent earlier this year to another Member, which confirmed such a position. In that letter she noted the common practice of treating infections with antibiotics and that PANS/PANDAS could be treated successfully in that way if caught early enough. I am sure she will also be aware of the PANS/PANDAS working group statement that was issued earlier this year.
The working group consisted of representatives from the British Paediatric Neurology Association, the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing, the Royal College of Occupational Therapists, and the British Paediatric Allergy, Immunity and Infection Group, as well as parents, social workers and campaigners. The statement is an important step. It signposts clinicians to the international peer-reviewed treatment guidance in the absence of peer-reviewed treatment guidance domestically. The position appears to be the same as the Minister set out in her letter. I therefore ask her to use her time today to confirm that to the House and pledge to make a written statement to the same effect. The power of such a statement in the face of doctors refusing to believe in your child’s illness would be literally life changing and potentially life saving. As I have said, as a Scottish MP I would want to see parity of support in Scotland. I hope that when the SNP spokesperson, the hon. Member for Motherwell and Wishaw (Marion Fellows), speaks in the debate she will agree to take forward a request from me to the Cabinet Secretary for health to ensure that we see that parity of care in Scotland.
I commend the hon. Member on the preparation that went into this debate and the information that she sent round to colleagues. One issue that seems to be present in the condition is the crossover with autism spectrum disorder, attention deficit hyperactivity disorder, and pathological demand avoidance and other types of autism. It would be useful to hear more from her about how the symptoms can sometimes be confused.
I accept that the presentation of the symptoms can and does give clinicians pause for thought. The very severe onset of symptoms is clearly very different from other mental health conditions that develop over a period of time. As I say, when a patient presents with those symptoms to a GP there is an opportunity to take the antibiotic step that would allow PANS/PANDAS to be ruled out at an early stage, if that is not the condition that they have. Today’s debate is aimed at raising awareness so that we can separate out the different conditions. I am grateful to the right hon. Member for Skipton and Ripon (Julian Smith) for taking part in the debate.
I hope the Minister will be able to take such vital steps today. Looking to the future, I think we all want to see NHS and NICE guidance and proper research into the conditions and their treatment. I am sure the Minister and her officials have regular meetings with representatives from the NHS, the Academy of Medical Royal Colleges and the National Institute for Health and Care Research. Can she ensure that PANS is discussed in those places, that awareness is raised and that there is home-grown leadership? Medical conditions do not have nationalities and, with political will, there is no reason why the UK cannot be a world leader in treating this one.
I want to look at aspects of dealing with a health condition that do not just stem from medical diagnosis and treatment. I hope the Minister regularly speaks to colleagues from other Departments where their remits cross. There is a remit for the Department of Health and Social Care in building the hospitals, but it is the Department for Transport that makes sure there are roads to get people to them. It is the Minister’s Department that comes up with a cancer strategy, but the Department for Work and Pensions sets the policy on statutory sick pay and disability benefits. In this case, although she has an incredibly important role in ensuring the recognition and treatment of PANS/PANDAS, we need to look at the other impacts on a child who is so poorly.
The hon. Lady is making a powerful speech. Given that we do not know how many children are undiagnosed, is it possible that many of them could be in hugely expensive specialist education for children with autism or ADHD with high student-staff ratios that is wholly inappropriate for them and would not be needed if they had been diagnosed and treated?
It comes back all the time to this root issue: recognition and treatment of this condition mean that outcomes on every level are much better, not only for the individual children and their families, but from a wider societal perspective. When I asked the youth board what it thinks needs to change to help other children with PANS, one of the main responses was more support and information for schools. I know that that is not the Minister’s portfolio, but given the overlap I trust that she will be able to raise that with her colleagues.
Childhood and adolescence are important times in someone’s development, not just educationally but socially. Childhood and teenage friendships are a vital part of how we mature and learn to navigate the world, and never more so than when facing a terrifying illness. It was difficult to hear children on the youth board talk about losing their friendships because as adults there is so little we can do, but I felt that it was important to ask the question because it is fundamental to children growing up. One child told me that they lost most of their friends when they transitioned to secondary school and how hard it was to make new friends when people only see how they act when their illness is in control. Another talked of how they lost all their friends seemingly overnight—they simply became a taboo subject that other children and their families did not talk about.
There were other more positive stories. One mum told me how her daughter’s friends would come and sit outside her bedroom door to try to convince her to come out and that when her daughter finally got the right treatment, her friends were some of the first people there, literally running up to their house to see her. They told her that they felt they had her back, and within a week they were out having fun together. As a parent, I am the first to acknowledge that there is nothing we can do to make children be friends with each other, but when we talk about appropriate treatment and support in school, it is these friendships that are also at stake.
I was going to remind hon. Members to bob if they wanted to speak, but you have all bobbed, so thank you. I want to bring the Front Benchers in from 10.28 am.
It is a pleasure to serve under your chairmanship, Mr Dowd. I thank the hon. Member for North East Fife (Wendy Chamberlain) for bringing this important debate to the House.
As already detailed, PANS and PANDAS can change a family’s life overnight. That is exactly what happened to my constituent Neil Gilson and his family. His son Jack was 18 months old when he caught tonsilitis, and an otherwise innocuous childhood illness turned their life upside down. Jack went from being a normal and happy little boy to one who was aggressive and anxious. He struggled playing with his friends, would go days without wanting to leave the house, and would not speak a word for long periods of time. His illness was not limited to his mental health but affected his physical health, too; he lost his fingernails and toenails and had very little energy. Neil describes it as,
“it was like there was no-one there”
some days—far from normal behaviour for a young boy.
For years, Neil and his wife sought a diagnosis. Various behaviours were put down to Tourette’s syndrome, an allergy or even just normal behaviour for his age, but one morning, Neil heard a news story about PANS and PANDAS that matched Jack completely. His doctor had never heard of the condition, but after an appointment with a specialist and a course of antibiotics, they had their son back in just two weeks. That is what makes PANS and PANDAS so shocking. It is an inflammation of the brain that can be quickly and effectively treated with a course of antibiotics, but it is so little known that it is impossible to say how many parents’ concerns are being put down to other causes simply because their GP has never heard of PANS and PANDAS. Will the Minister bring in training and guidance, so that obtaining a diagnosis is no longer a matter of chance, and work to raise awareness among healthcare professionals and those involved in childcare, so that families do not have to go through years of anxiety and all the problems that come with an unwell child.
It is an honour to serve in this debate under your chairship, Mr Dowd. I thank the hon. Member for North East Fife (Wendy Chamberlain) for securing this important debate and the Backbench Business Committee for finding time in the parliamentary timetable.
I also pay tribute to PANS PANDAS UK. The charity has been working tirelessly to raise awareness, provide support to parents and push for change. They are not professional politicians or lobbyists, but simply parents who are fighting for a change, and I thank them for all their work.
As the former co-chair of the APPG on PANS and PANDAS, I am glad that the condition will now find itself inked into the pages of Hansard. Too many young people and children across the UK are suffering from this awful, life-altering condition and are not getting the support that they deserve. In many cases, had that support been available when they first exhibit changed behaviours, it would have drastically improved their recovery—for some, almost immediately.
Like many in the Chamber today, I am here because about seven years ago a couple in my constituency contacted me about their child; a previously outgoing, bright, happy and lively child suddenly had a switch flipped and became ridden with anxiety, was unwilling to leave the house, and suffered from extreme OCD. More recently, another constituent had an experience similar to that described by the hon. Member for North Devon (Selaine Saxby): the doctors did not know what it was. At our first APPG meeting, we saw video evidence from parents about the sudden changes: tics, eating disorders, extreme anxiety, and violent or introverted behaviour. As a parent I found that harrowing to watch, and I can only imagine the anguish and difficulty it must cause for families up and down the country.
For many, there is then a struggle to get treatment as they face the brick wall that is too often formed in the NHS, the near impossibility of getting speedy and helpful treatment, GPs who are not aware of the condition, and a chronic lack of awareness even in specialist units. Professional demarcation lines mean that too often the psychiatrist and neurological specialist will not realise that the cause is a strep infection or similar, which can be sorted fairly quickly. All that is coupled with a scepticism of some, who do not believe or accept that it is a condition. Remember when that happened with myalgic encephalomyelitis? We know of children with the symptoms of PANS/PANDAS who have gone through years of agony and been told to go to therapy. If they finally get lucky and win the lottery for treatment, they are often prescribed amoxicillin—a common antibiotic, which we gave our kids every time they had an ear or throat infection. It makes a huge difference, often almost immediately—within a week or two. Sadly, when those who have had PANS or PANDAS for months or years are finally diagnosed, they often need more complex and thus more expensive treatment, and it is a long haul to recovery.
It is a pleasure to serve under you today, Mr Dowd. I congratulate my colleague on the APPG, the hon. Member for North East Fife (Wendy Chamberlain), on securing the debate and on giving such a comprehensive account in her opening remarks. I also acknowledge the work that the hon. Member for Brentford and Isleworth (Ruth Cadbury) has done on the matter here in the House.
As the chairman of the APPG on PANS and PANDAS, I also extend my gratitude to the organisation PANS PANDAS UK. I have had the privilege of working closely with Vicky and the team, and have seen at first hand their tireless efforts as the only charity in the UK that supports children and families living with the conditions. Their advocacy and community support work continue to prove invaluable for patients, carers and healthcare professionals alike.
Like most of us here in Westminster Hall this morning, I was first made aware of PANS PANDAS UK when a constituent contacted me to discuss their case. Separately and much later, a dear family friend contacted me to say that her daughter had also been affected. I recognise many of the descriptions given by the hon. Member for North East Fife of the circumstances that they had to deal with at home. In my speech today I will set out three key issues that have become apparent to parents and interested professionals over the years: first, the misinterpretation of symptoms; secondly, the subsequent misdiagnoses; and, thirdly, the significant problems that such misdiagnoses cause for children with these conditions.
First, according to a survey by PANS PANDAS UK, 95% of GPs do not know about these conditions, and 19% of affected parents said that their paediatrician was aware of these conditions but considered it too controversial to diagnose a child with any of them. As a result, many children with PANS and PANDAS receive multiple diagnoses, often of more widely recognised conditions with overlapping symptom profiles, including anxiety disorders, sensory processing disorders, ADHD and Tourette’s syndrome; some 31% of children with PANS or PANDAS are diagnosed with autistic spectrum disorder. That shows a clear lack of appropriate training for health professionals and means that the wide-ranging symptoms of these conditions are not being recognised as potentially linked to one of these conditions.
First of all, I thank the hon. Member for North East Fife (Wendy Chamberlain) for securing this very important debate and for, as always, setting the scene so well. She and I may be from different political parties, but when we clearly agree on social issues, I am more than pleased to come here and support her. I added my name, as did others, to early-day motion 948, submitted by the hon. Lady to highlight the issue of PANS and PANDAS. It is a reminder that the census estimated that between one in 200 children in the United Kingdom of Great Britain and Northern Ireland are subject to this condition. The numbers are not minuscule; it resonates across the whole UK.
PANS and PANDAS are two related paediatric disorders that can have a profound impact on a child’s life. Those who have spoken before have outlined examples and interventions to illustrate the case being made so well. There is currently no uniform recognition or treatment for the condition, as the hon. Lady set out in her introduction. Although the World Health Organisation guidance recognises the condition and recommends treatment with antibiotics, that has yet to be adopted by the NHS. The Minister knows I have a fondness for her as a Minister. I know she does well and that her instinct is to respond well and to answer the questions that we ask. I look forward to hearing her response.
The NHS not recognising these conditions leaves families devastated as they struggle for treatment. Some families have said that they have been referred to CAMHS as an alternative to NHS treatment. That is not always the most appropriate treatment, by the way, but at least there is some response. Others have outlined the symptoms that PANS and PANDAS can include. We probably have all recognised them in our constituency cases, whether it be OCD, tics, restricted food intake, development regression, anxiety, depression, irritability—even hallucinations and delusions. Those are so great that they cannot be ignored.
20 of 42 shown
However, in the UK, without those pathways the vast majority of children are given inappropriate and ineffective treatment for their symptoms, rather than for the underlying cause. That often involves long waits for mental health treatments from child and adolescent mental health services, which I think we all know and recognise are overburdened. In a survey carried out in 2020 for PANS PANDAS UK, 95% of parents said that their GP had not suggested PANS/PANDAS as a diagnosis. Often, they can suggest no diagnosis at all; families must then research and fight for treatment themselves. The reality is that, after months of seeing their child suffer without any explanation, families end up turning to private healthcare, but that it only an option for a few. It is only at that point that a diagnosis is forthcoming.
I suspect that I am like most MPs, in that I became aware of PANS because a constituent approached me for support with her local NHS doctor. In the run-up to this debate, I had the privilege of speaking to some of the children and young people who sit on the PANS PANDAS UK youth advisory board, who shared their experiences with me. Their experiences of being diagnosed are all different, with only one exception: they were all negative. If any of them are watching today, I want to thank them for being able to talk to me about their experiences. It was really important to hear directly from them, and I thank them very much for that.
One of the children on the board talked about the fact that the doctors really did nothing for her. Every time she went to the hospital, she was made to feel like a mystery. Because the doctors did not understand what was wrong with her, it felt as if they were just going to leave it and give up. Another child told us about being sent from place to place, with no medical department taking responsibility. She went through waiting list and waiting list, with no resolution, as the symptoms continued and worsened.
It is really important to remember that the initial recommendation on diagnosis is for two weeks of antibiotics. As a parent, I find it quite difficult to understand why that is not being pursued by GPs, because it treats the initial infection if it is PANS/PANDAS. It would prevent the symptoms from deteriorating further, which might lead to someone needing more mental health support. Frankly, if it is not PANS, the antibiotics will not work and we will be able to rule that out pretty quickly.
Almost all the children I spoke to had received private treatment and given up on the NHS, but private diagnosis and treatment plans are often rejected by local GPs and health boards. One child remembers a doctor saying that he would refuse to treat an American illness. Another was refused ongoing treatment because the consultant did not believe that PANS was real. Many children have their medications stopped when their parents move back to NHS care; indeed, this is something I am supporting one of my constituents with now, with NHS Fife newly refusing to provide prescriptions for privately recommended medication. That is despite the fact that my constituent’s child has had both an NHS and private diagnosis. Imagine being a child and going through the trauma of this change in your life and condition—it is terrifying—then being told by the adults treating you that they do not believe that what you are experiencing is real or exists.
There is a lack of direction from the top. I have asked before about the implementation of the World Health Organisation guidelines that will formally acknowledge PANS/PANDAS and its treatments within our domestic health systems, and I have been told it will take some time. In the meantime, children are suffering needlessly, as are their families. We have to consider the wider impact on the siblings of children experiencing this condition.
I understand that the Minister might not want to pre-empt the independent medical process relating to the NICE guidelines, but if she would confirm her position that PANS/PANDAS is as real as having a broken leg or the flu, I really believe that that would be a significant step. I hope that that will not be a difficult ask.
The first and most obvious point is that a child who is too poorly to get dressed is probably unlikely to be in school. If they are in school, flare-ups of the condition—one of the symptoms is difficulties with cognitive processing—can mean dropping behind. When I recently asked children on the youth board about that, I was told that universally before they were ill they had loved school and had been doing well there. In fact, a survey carried out by PANS PANDAS UK this year found that, pre-onset, only 9% of patients were below the expected academic standard for their age group. After onset, the figure soared to 53%.
As with treatment, support from the school is a lottery for families. Most schools and teachers do not know what PANS/PANDAS is and have no idea how to support students with it. I have spoken to families of children who have been out of education for over a year because they have been too ill to go to school. I have spoken to others who say that the support is so poor that they have moved to home schooling. Others count themselves as lucky, because the special educational needs department has been open to supporting them.
One girl on the youth board told me that the SEN department at school was her safe place, that it was really calm, and that her teachers had researched the condition and made allowances for her school work. That should not be the exception in children’s experience—it should be what we aspire to for all of them. Not being in school is a reality for many children with PANS/PANDAS, particularly if they are not receiving the proper medical support to help them get better.
I want to focus on the children and young people who suffer so much with PANS/PANDAS, but of course we need to think about their families too. Putting aside the strains and stresses experienced by a parent who witnesses their child being so ill, caring for them and having to fight battle after battle for treatment, they might face the choice of accepting a prescription for anti-psychotic medication for their 9-year-old child or social workers deciding to remove that child from their care.
Financially, this illness has a huge impact, whether through parents stopping work to care for their child or through seeking private treatment. The PANS PANDAS UK 2020 parents survey found that less than 20% of parents had experienced little or no financial impact. Almost a quarter estimated a financial impact of over £10,000, while over 8% estimated that it was over £100,000. An additional quarter simply said, “substantial” without putting a figure on it. Considering that a substantial financial impact is relative, that might be enough to put a family on the poverty line, whether the actual figure is £1,000 or £100,000. What about those children where private medication or support is simply not an option? The reality is that, at the moment, money matters for someone with a child who has PANS/PANDAS. Without NHS guidance and diagnosis and with so many families relying on private healthcare, we have absolutely no way of knowing how many children are going undiagnosed, as the hon. Member for Brentford and Isleworth (Ruth Cadbury) referenced.
What we do know is we are seeing a crisis in mental health conditions among our young people. Anxiety is skyrocketing, as are compulsive behaviours and tics. We cannot rule out the likelihood that the PANS/PANDAS cases that we know about are just the tip of the iceberg. We need urgent research, treatment and diagnosis to be universally available so that it does not matter where a child lives or what their family means are; their chances for support are the same.
I pay tribute to the support that PANS PANDAS UK and the wider community have given me, but also to families and children around the country. I would like to end by returning to the reflections of some of the children I met; they are so brave. They talked about how confusing and scary it was to suddenly have voices in their head. They talked about the panic of suddenly having to touch the same item in their bedroom over and over again—of not knowing what was happening, of sharing that with anyone in their family, or of having a brain that could not focus. This is their message to adults in Government, and to all of us here today: what is happening to them is not a choice. They care about school, their friends and their lives. They are not naughty children. If after this debate even just one more person understands that, that would help. This is not just a healthcare problem; it is a political problem, a societal problem, and one that increasingly needs urgent attention.
I pay tribute to Neil’s fantastic work in raising both awareness and money for PANS and PANDAS. Since 2019, he has swum marathon distances in Loch Lubnaig and in 2021 became the first person to swim across the Bristol channel from Swansea to Ilfracombe. He attempted to swim the 70 km length of Lake Geneva this summer; he was 56 km in when he developed hypothermia and had to be pulled out by his team, but he has vowed to try again next year. Regardless of the distance, Neil has raised a fantastic amount of money and awareness and will change the lives of many children like his son Jack.
I hope that us coming together today and highlighting the cases in our constituencies will in itself help to raise awareness, so that early access to those antibiotics is more widely available to children who may have PANS and PANDAS.
My hon. Friend the Member for Batley and Spen (Kim Leadbeater), who is unable to be here today, asked me to share the experience of a constituent whose child had PANS. Once the support and help was in place, the child started to recover; they are now thriving, and are starting college this month. With the right treatment and support, children can thrive and succeed, but getting the diagnosis is key.
I welcome the working group that has been set up by stakeholders, including PANS PANDAS UK and various royal colleges. It recommends that all NHS trusts develop comprehensive cross-speciality and multidisciplinary team provision to review and treat children with acute-onset neuropsychiatric symptoms and that children should receive a full medical evaluation. As we have heard, the quick test for whether a child has PANS/PANDAS or something else is to start a course of amoxicillin or a similar antibiotic. If symptoms improve, they have PANS/PANDAS; if they do not, that is the point to move on to more complex diagnostics and treatment to try to work out what the cause is. I hope that change will result from that recommendation.
As we have heard, families are too often forced to get private treatment—spending a small fortune for something they should have been able to get on the NHS. Of course, many of our constituents do not have the money for private treatment, and too many cases—we do not know how many—remain undiagnosed. The formation of the working group shows that we have made some progress since 2019 and 2020, when we first raised the issue in Parliament. In the meantime, more children and families are being affected, and more lives are being ruined and turned upside down because PANS/PANDAS is not being treated quickly and properly.
I look forward to hearing from the Minister and hope that she can tell us what her Department is doing with regard to the working group’s recommendations. I very much hope that she and her officials do not put it into what the former Member for Norwich South called the “too difficult box”.
Secondly, continued misdiagnoses cause significant delays in the identification of PANS and PANDAS and the provision of effective treatment. Currently, there is no specific test that will prove or disprove the existence of the conditions, so a diagnosis must be made on the basis of an analysis of the patient’s medical history, a review of their current symptoms and a physical examination. Laboratory work and additional testing can be ordered to identify an infectious trigger, rule out other diagnoses and inform treatment plans, but all of that relies upon a clinician’s basic awareness of these conditions.
PANDAS is listed in the international classification of diseases by the World Health Organisation, and two sets of international peer-reviewed treatment guidelines exist. In fact, it is international clinicians currently working in this field who emphasise the importance of early diagnosis of PANS and PANDAS to reduce the risk of patients developing disabling chronic neurological conditions. Understanding the symptoms and detecting them early is crucial to patient outcomes.
Thirdly, we cannot underestimate the strain that these conditions place on parents, families and the children affected. Many families across the UK struggle to access any healthcare provision at all for these conditions on the NHS. In the same PANS PANDAS UK survey of parents that I referred to earlier, 47% of respondents said they had not received any treatment from the NHS and 37% said that, as a result, they have had to seek private healthcare Too often, access to adequate health provision for families depends upon a parent’s ability to carry out research and advocate for their child, and then fund private assessment and treatment.
As we have heard, the misdiagnosis and misinterpretation of symptoms has led to children being sectioned or admitted to psychiatric hospitals, and subjected to treatments that are ineffective, inappropriate or harmful. Families who have been rejected for referrals, or bounced between doctors and psychiatrists who are reluctant to consider a PANS PANDAS diagnosis or who are unaware of the conditions, must either watch their children deteriorate or somehow scrape together enough money to consult someone who has appropriate experience in the field. Private and overseas treatment must not be the only viable option for appropriate care in a nation that rightly prides itself on having an inclusive and accessible health service.
It is evident that significant change is needed in the UK to ensure that children receive timely and accurate diagnosis and the appropriate treatment and support that they need. We know that the underlying cause of PANS and PANDAS is suspected to be an abnormal immune and inflammatory response to infection, so my first request is that research into post-infectious disorders is given adequate funding and is accelerated across the UK. That is necessary if we are to see an improvement in the training and guidelines given to clinicians regarding these conditions.
Secondly, as the PANS PANDAS working group, we are pressing for the swift development of a UK-wide consensus on the treatment of children presenting with acute-onset neuropsychiatric symptoms. As I have already highlighted, without appropriate training and guidelines, UK clinicians are currently ill-equipped, so thirdly, we need to prioritise the development of clinical pathways to ensure that children and families do not continue to suffer as so many have suffered already.
I thank the UK Health Minister who is here today, the Under-Secretary of State for Health and Social Care, the hon. Member for Lewes (Maria Caulfield), for her interest and I invite her to meet members of the APPG, PANS PANDAS UK and representatives of parents to hear their experiences first hand. Listening to the experience of patients is the first step in ensuring both that they receive the support they deserve and that we can secure the changes that are needed.
The hon. Member for North East Fife sent us some information at our request, which we appreciate. That illustrates the issue the hon. Lady wants to put forward, so we can support her from a constituent’s point of view. When I read what the hon. Lady’s constituent, who is suspected to have PANS and PANDAS, had said, there was a real disconnect given that health is devolved.
The hon. Member for North East Fife referred to the comments of the hon. Member for Motherwell and Wishaw (Marion Fellows), which I know, without even hearing those words, will also support the points of view that we are putting forward today. The devolved nations must now fight harder for an approach.